The Lullaby Trust
Safer Sleep for Babies in Essex
Our name change
On 10 April 2013, The Foundation for the Study of Infant
Deaths (“FSID”), became known as The Lullaby Trust.
Why the change ?
• 5 babies a week still die from sudden infant death.
• To achieve our aim of reducing this number by half by 2020, it
was decided that we needed a warmer, more welcoming name,
to make us more approachable.
• Months of research and consultation with families and
professionals went into the name change.
• Much of the legal and design work was carried out either free of
charge or at a greatly reduced rate, meaning that the rebrand
has cost the Charity very little compared to rebrands of other
companies.
• See our website www.lullabytrust.org.uk for a full set of FAQs.
The Lullaby Trust Strategy
Our over-arching aim is to reduce the number of
unexplained cot deaths to below 200 by 2015 and
to halve it to 150 by 2020.
Definition of Sudden Infant Death
• Sudden Infant Death (sometimes known as “cot death”) is the
sudden and unexpected death of a baby for no obvious
reasons. The post-mortem examination may explain some
deaths.
• Those that remain unexplained after post-mortem
examination may be registered as sudden infant death
syndrome (SIDS), sudden infant death, sudden unexpected
death in infancy, unascertained or cot death.
Sudden Infant Deaths per 1,000 live births:
1989-2011
England & Wales, birth to 12 months
(unascertained deaths included from 1997 onwards)
Source: Office of National Statistics (ONS) 2013
Sudden infant death around the country, 2009-2011
England and Wales
Source: ONS 2013
Rate of death by age of mother, 2011
England and Wales
Source: ONS 2013
Unexplained infant deaths* in
England and Wales 2011
•
•
•
•
•
Boys accounted for 63% and Girls 37% of deaths
Lowest rate - London at 0.29 deaths per 1,000
Highest rate - West Midlands at 0.41 deaths per 1,000
73% occurred in babies aged less than 4 months’ old
Low birthweight babies (less than 2,500 grams) were
over 3 times more likely to die than babies born with
a normal birthweight
• Mothers under 20 were 2.6 times more likely to have
a child die suddenly and unexpectedly
• Since the launch of the Reduce the Risk campaign in
England and Wales in 1991, the number of sudden
infant deaths has fallen by around 65%
*includes unascertained deaths
Why this baby?
Baby usually aged up
to 6 months
SIDS
Vulnerable baby?
Source: Filiana and Kinney 1994
Risk factors
What we know about SIDS families today:
•
•
•
•
Smokers – in 80% of SIDS cases, one or both parents is a smoker
Premature or low birth weight babies – 5 times more likely
Families living in deprived conditions – 80% of deaths
Young parents – 2.6 times more likely
 All higher risk groups and all less likely to know and follow safe
infant care practices
Gestational age and the risk of SIDS
Gestation
SIDS
N=323 %
Controls
OR (95 CI)
N=1288 %
40+
weeks
112
34.7 730
56.7
1.00 (ref group)
37-39
weeks
148
45.8 488
37.9
1.86 (1.38-2.51)
36 weeks
or less
63
19.5 70
5.4
5.07 (3.29-7.80)
Source: CESDI
Safer Sleep - Reducing the Risk
The most dangerous risk to take
• Never sleep on a sofa or armchair with a baby - this increases
the risk by 50 times
• In England and Wales, 1 in 6 SIDS deaths involved co-sleeping
with an adult on a sofa*
• 2 studies have shown an increased % of SIDS sofa deaths**
* The Lullaby Trust Evidence Base (see www.lullabytrust.org.uk)
**Fleming abstract from SIDSI conference 2008, p 59. 6% v 17%
Back to Sleep and Feet to Foot
Bedding
• Covers should be up to
shoulder level only and
firmly tucked in.
• A high proportion of infants
who die are found with
their head covered with
bedding*.
• Babies do not need to wear
hats indoors.
*The Lullaby Trust Evidence Base
Baby sleep bags
• Use correct size for weight of baby
• Use correct bag for time of year (seasonal tog ratings
available)
• Do not add any blankets on top
Sleeping position for final or reference sleep
SIDS
Put down: No
Controls
%
No
OR
95% CI
%
Back
141 44.5 895 69.1
1.00
Ref group
Side
129 40.7 361 27.9
2.19
1.62-2.95
Front
47 14.8
10.23
5.92-17.68
Source: CESDI
39
3.0
Babies are still being slept prone
• 14% of The Lullaby Trust’s survey sometimes still slept their
baby prone
• 71% slept their baby prone because the baby seemed to like it
better – the race to get a baby sleeping through the night?
Smoking
Mother smoked
pregnancy
Partner
smoked
SIDS
No %
Controls
No %
OR
Non-smoker
No
33 16.9
421 53.9
1.00
Non-smoker
Yes
40 20.5
163 20.9
3.41
Smoker
No
44 22.6
77 9.9
7.01
Smoker
Yes
78 40.0
119 15.3
8.41
Source: CESDI and other studies
Smoking
70% of parents are not aware of the extent of
cot death risk posed by smoking in their home
Source: The Lullaby Trust Survey, Jan 2007
Over 100 babies a year could be saved if no
pregnant woman smoked
What can we do - Signposting ?
• You can give pregnant women who smoke the best chance of
stopping by putting them in touch with the local stop
smoking service
Tommy’s “Baby be smoke free” website
Source: http://www.tommysbabybe.org.uk/main.php
Contact Numbers
Source: http://www.tommysbabybe.org.uk/main.php
The safest place for a baby to sleep is in a cot in
your room for the first 6 months
If you share a bed with your baby the risks are
particularly increased if you or your partner:
• are smokers (no matter where or when you
smoke and even if you never smoke in bed);
• have recently drunk alcohol;
• have taken medication or drugs that make you
sleep more heavily;
• are very tired.
OR
• If your baby was born premature (born before
37 weeks);
• was low birth weight (less than 2.5kg or 5.5 lbs);
Infants’ sleeping environment
SIDS
N=321(%)
Room sharer
Controls
N=1299(%)
Multivariate
odds ratio
81 (25.2)
506 (39.0)
1.00
Solitary sleeper
114 (35.5)
420 (32.3)
10.49
Bed sharer put
back in cot
24 (7.5)
178 (13.7)
0.67
Bed sharer at end
of sleep
82 (25.5)
189 (14.5)
9.78
Sofa sharer
20 (6.2)
6 (0.5)
48.99
Source: CESDI
Bedsharing and small at birth
(<37 weeks & or <2500g)
Small
MOR
Small
MOR
By bed
No
1.00
Yes
3.68
Co-sleep smokers
No
9.11
Yes
37.41
Co-sleep non smokers
No
1.12
Yes
15.18
Another room
No
5.18
Yes
79.45
Source: Blair et al, 2006
Room and baby temperature
• Remember to always ensure that the baby is comfortable
Mattresses
• Good condition, firm and fits
the cot
• Should have undamaged
waterproof cover,
thoroughly cleaned and
dried before use
• Ideally use a new mattress
for each new baby
Swaddling
• Some people think swaddling young babies can help them
settle or sleep. Whilst we do not advise for or against
swaddling, we do urge parents to make sure they swaddle
their baby in the safest way possible.
• If you decide to swaddle your baby make sure you use
lightweight materials and do not cover their head. Never
put them to sleep on their front, and make sure you keep
checking their temperature so they do not get too hot.
Source: The Lullaby Trust Evidence Base
Breastfeed your baby
Babies who were at least
partly breastfed were
one-third less likely to die
as a cot death than
babies who were never
breastfed
Source: McVea et al, The role of breastfeeding in sudden infant death
syndrome. J Hum Lact. 2000; 16: 13-20
Dummies
•
Using a dummy can reduce the
risk of cot death
•
Use after breastfeeding is
established
•
Gently withdraw the dummy
from 6 months and by 12
months
•
Use when settling baby to sleep
•
Should be routinely given for
every sleep period
Meta-analysis of ‘last sleep’ dummy use and the
incidence of SIDS
Source: Hauck FR et al (2005)
Do pacifiers reduce the risk of sudden infant death syndrome?
A meta-analysis Pediatrics 116: e716-e723
Breastfeeding and dummies
• Dummy use is more likely to be a consequence of breast
feeding difficulties than a cause of them - from research by
Kramer et al, Jama., 2001.
• Any effect on breastfeeding up to at least 6 months is minimal
at best – Howard et al, Pediatrics 1999;103
• Only introduce a dummy after breastfeeding is established – 1
month guideline
Does dummy use have an adverse effect on
speech and language development?
• They are frequently used by speech and language therapists
for special groups of infants:
– Infants with dysphagia
– Preterm infants on prolonged tube feeding
• There are anxieties about the possible impact on normal
speech and swallowing development if use is very prolonged
• No evidence of adverse effect on these processes of use for
less than one year
Source: Annie Aloysius, RCSLT Paediatric Dysphagia Advisor
Imperial Healthcare NHS Trust
Risks not causes
• We still don’t know WHY these babies die
• Many parents don’t follow all the advice and their babies
don’t die – why?
• Triple risk theory – external factors plus a baby’s vulnerability
come together at crucial points
• Crossing the road – risk versus cause
Spot the 8 risks
The Lullaby Trust
When a Baby Dies
How can I help this family?
What is my role?
Social
workers
A&E
Paramedics
Child
Protection
Police
Pathologists
Coroners
SUDI
Coroners
officers
Paediatricians
Midwives
Health
visitors
GPs
Your contact with a bereaved family
• Why are you contacting the family?
• What do they need from you, as a professional?
• Are you informed about the family, the baby and their needs?
• Keep an open mind – risks are not causes
• Parents need you to do your job, with sensitivity
Important for parents to:
• Have time to say the last
goodbyes
• Choose mementos – photograph,
hand and foot prints, lock of hair
• Have their baby’s name used
• Be informed
• Have someone thinking about the
whole family – other children and
grandparents
• Have the opportunity to see their
baby again before the funeral
Parents need ongoing contact
• An explanation of what has happened/is being done with
their baby
• To know of any clinical or other findings as they are made
• To have information about what happens next
• To participate in decision making as far as possible
The effect of a caring approach
“He just knelt on the floor beside me and took my hand.”
“He looked really upset. It sounds awful but I was so pleased
that he really seemed to care.”
“He said I could go back anytime I wanted. I haven’t yet but it is
good to know I can.”
Comments from bereaved parents
“Do not be afraid to show that you are a human being and
have emotions. Show sympathy and empathy but do not say
‘I can understand what you are going through’, none of us can
possibly understand the feelings that parents are
experiencing.”
DI Norman Inniss
You may never know the value of the
support you give but don’t let that stop
you from giving it
The Lullaby Trust
Support and Education
The Lullaby Trust Helpline
Contact with The Lullaby Trust:
2 Freephone helpline numbers –
personally answered
Bereavement Support : 0808 802 6868
[email protected]
Information Line: 0808 802 6869
[email protected]
The Lullaby Trust Helplines
• Both open every office day
10am-5pm
• Bereavement support line also open every weekend
evening of the year and public holidays (manned by
Helpline befrienders) 6pm-10pm
Befrienders
• Trained by The Lullaby Trust
• Supported by The Lullaby
Trust
• Parents offered support by
telephone, email and letter
New Publications
As part of our rebrand, many of our leaflets have been reviewed
and these are now available for ordering:
– A parent guide giving the latest, research-based
information on promoting “Safer sleep for babies”
– A separate “Easy Read” card, also available in other
languages as a PDF from our website soon
– A guide for professionals, giving more background and
research information
For Parents
UNICEF have confirmed
that distribution of this
guide “does not interfere
with Baby Friendly
Accreditation.”
For Parents
This card is fully endorsed by UNICEF
For Red Books in Essex
For supplies of this version, please contact Jan Levett
at [email protected]
For Professionals
Brand New Website
www.lullabytrust.org.uk
Online support
In Memory and Discussion Group
www.lullabytrust.org.uk
Publications for bereaved families
Promoting Bereavement Support
• A new card available for families and professionals,
giving details of how they can access our
Bereavement support services.
• A dedicated freephone number for families and
professionals to speak to a Helpline Adviser or a
Befriender.
Care of Next Infant scheme (CONI)
“Trying to rear more children
after one of your children
has died is an overwhelming
experience and I would not
have got through it without
CONI”
A Coni Parent
Family Days
• Each region holds a free
day out for bereaved
families to meet and
support each other
• Details of future events
can be found on our
website
It is vitally important to continue to promote the
messages